I took the first steps in May 2003. I walked a half marathon and my foot was really sore when I crossed the finish line. I thought it was because of my shoes – but the running shop wouldn’t sell me new shoes. Instead, they insisted that I make a doctor’s appointment.
By May 2004 I had a diagnosis: Charcot Marie Tooth. CMT, the most common hereditary neuromuscular disorder, impacts 1 in 2500 people. Including me.
For those of us with CMT, our peripheral nerves don’t function correctly – nerve signals don’t transmit properly so our muscles are not stimulated, and the result is progressive degenerative muscle atrophy and a loss of sensory and motor function. There is no cure.
It’s scary to be told that you have an incurable condition. Especially one whose path and manner of development is unknown.
At first I just ignored my CMT. I was pretty active and felt healthy. I set a few new goals for myself, including walking a marathon in 2004. I took up yoga. I began to piece together a healthy lifestyle, including a visit to a nutritionist. But then… Well, you know how it goes. I got busy. I stopped exercising. And slowly, my health started sliding away.
I may have ignored my CMT, but I couldn’t ignore how I felt – which was pretty bad. It was getting tough to walk up my stairs.
I thought that if I increased my activity levels to what they used to be, it would help me to feel better. And being motivated by goals, in 2007 I set myself the goal of doing a triathlon. By 2009 I accepted that – for me – living life fully would mean committing to an active healthy lifestyle.
I’ve learned a lot since 2009. One of my biggest lessons is that with the right attitude, nutrition, and activity levels I can manage the impact of CMT on my life. Another? To take joy from movement – no matter what speed I move at!
Keep Moving to Keep On Moving
Since 2007 I have completed dozens of triathlons, and a few single sport endurance events including cycling century rides (100 mile and 100 kilometre distances), the Great Chesapeake Bay 4.4 mile swim, and the Dart 10km swim.
In 2013 I was advised that my hypermobility from Ehlers Danlos Syndrome and an unusually shaped knee would limit my time in triathlon. With patience and a deliberate approach I pulled myself back from the threat of no more races to achieve new personal bests, including podium performances in both swims and triathlons.
In 2015 I was named London Female Paratriathlete of the Year. This capped off my season which included racing for the USA and taking bronze at the ITU Open Paratriathlon World Championships.
Since I did my first triathlon back in 2007 I have tested, learned, redefined and beaten my limitations in ways I had never dreamed possible. But more than finisher medals or accolades, I’ve found joy in life through sport.
I am a complete believer in what Bill Bowerman, founder of Nike, famously said:
“If you have a body, you are an athlete.”
I’ve learned since doing my first triathlon in 2007 that no matter what our challenges and no matter what challenges we choose to set ourselves – be it walking down the street or completing an ultra marathon – we are all athletes.
Triathlon, endurance sport and committing to healthy living have given me a second chance at life. I want to share this with the world. I want everyone to know that embracing an active healthy lifestyle can help in the path toward joyful living. For me, an active healthy lifestyle has been the best medicine I’ve found when it comes to the management of my chronic conditions.
I am committed to spreading this message and increasing involvement in sport for those who may have never viewed themselves as athletes. In 2012 I founded the CMTAthletes group on Facebook – a community of over 1500 members designed to support those with CMT in their aims to live healthy active lives. In 2015 I was elected to serve as the paratriathlon representative on the Triathlon England London and South Central regional committees.
On this site write about all aspects of my life – from sport to the kitchen, from what I read in the newspapers to what I hear from my doctors. I share how I manage my health and well being, about my approach to fitness and healthy living. You can support the efforts to find a cure for CMT. You can follow my progress as I seek to constantly redefine – and beat – my own limitations. And I hope that you can find a bit of inspiration to do the same.
A special thanks to the endless support from my family; friends; product supporters Volare and Punk Rock Racing; my coaches at Red Top Swim; strength and conditioning guru Tom Dyer; pilates expert Brian Allen; sports therapists Michael Collins (The Magic Hands) and Mel Denyer; nutritionists Vicki Edgson and Jess Dyer; my doctors and physiotherapists at the Institute of Neurology in the UK, Jon Houghton my sports rehab doctor, Personal Balance Clinic and Stephen Makinde, and Tatami Health and Ellis Taylor; and to the charities that I support – the Charcot Marie Tooth Association, CMT UK and the Hypermobility Syndromes Association.